Most people know that Alzheimer's disease (AD) leads to memory loss and cognitive decline. Most people, however, may not know that many people with AD also suffer with serious behavioral issues. According to the National Institutes of Health (NIH), "Approximately 30% to 90% of patients with dementia suffer from behavioral disorders. They include symptoms such as depression, anxiety psychosis, agitation, aggression, disinhibition, and sleep disturbances."
People diagnosed with Alzheimer's disease are usually given one of the five medications approved by the FDA to "treat" loss of memory and cognition... but none are significantly effective. The 2012 "Best Buy Drugs Report" issued by Consumers Union was not given much publicity until excerpts appeared in The Washington Post on January 7, 2013. Consumers Union reviewed more than 1100 research studies and articles on AD meds, and began the recommendations section of their comprehensive report with this statement: "The medications used to treat mental decline in people with Alzheimer's disease are not particularly effective. When compared to a placebo, most people who take one will not experience a meaningful benefit."
The Research Center of the Alzheimer's Association reports similar dismal results. "On average, the five (FDA) approved Alzheimer's drugs are effective for about six-12 months for about half of the individuals who take them." The comprehensive "Alzheimer's Disease Progress Report" issued by NIH is only slightly more optimistic. NIH concluded that the five FDA approved AD meds "may help some people"... but even for those helped by these meds, it is "only for months to a couple of years."
Unfortunately, many doctors are either ignorant of this research or are not being completely honest with their AD patients and caregivers when they continue to prescribe these expensive but ineffective medications year after year. Money spent on these costly ineffective medications might be better spent on day care programs, home companions, or health aides if doctors shared this research with their patients and caregivers.
A May 30, 2016 Time Magazine article noted that "Americans with Alzheimer's disease each incur an estimated $35,000 in medication costs annually." That is a huge amount of money spent on medication to treat Alzheimer's and other health issues, an amount grossly inflated by money spent on medication that has no effect on their AD.
AD patients with psychiatric conditions are not much better off. According to the Alzheimer's Association, "When considering use of medications, it is important to understand that no drugs are specifically approved by the U.S. Food and Drug Administration (FDA) to treat behavioral and psychiatric dementia symptoms."
Because anti-anxiety medications currently given to people with AD do not work effectively or only work effectively for a brief period of time, many AD patients are given powerful anti-psychotic medications. These medications come with box warnings specifically stating that they should not be given to people with dementia because of the greater risk of serious negative side effects. However, when no other medication seems to help, doctors often try these heavy duty meds anyway, hoping for a better treatment outcome.
Pharmaceutical companies are currently investing huge sums of money hoping to discover medication that will prevent, effectively treat, or significantly slow down the rate of cognitive decline for those with AD. I wish them success. However, I hope that pharmaceutical companies are also investing huge sums of money to discover medication that can effectively treat severe anxiety and other psychiatric issues affecting so many patients with AD.
Worsening psychiatric issues can lessen the quality of life for many loved ones with AD even more than their worsening cognitive deficits. As a former spouse caregiver, I can attest to the fact that my wife's psychiatric disorders greatly diminished the quality of her life, particularly in her last year. Despite a three week stay in a psychiatric hospital, doctors were never able to find any medication to properly treat her severe anxiety and agitation.
Last week, a U.S. Senate subcommittee approved a bill containing a $400 million increase for AD research funding at NIH for the 2017 fiscal year. Perhaps if this bill is passed, some of that funding can be directed specifically for research on medication to effectively treat behavioral disorders for people with AD and other forms of dementia.
If you would like me to respond to questions or comments about this column, please email me directly at acvann@optonline.net. All of my columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann. My next Huff Post column will be submitted in mid-July.
Readers can also go to www.allansvann.blogspot.com to learn more about my journey with Alzheimer's and read my articles published in caregiver magazines, medical journals, and in major newspapers.